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Increased Nodule size/ Pain AFTER radiotherapy?
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04/15/2014 01:46
Christl 
04/15/2014 01:46
Christl 

Re: Increased Nodule size/ Pain AFTER radiotherapy?

I did ask Prof. S the question if I can walk after RT or if I should take it easy. His response was to walk, so walking I did, both times. Hamburg is a great city and my husband and I walked from morning till night. I am not sure about running, but walking was not restricted.

Btw, my feet also hurt after RT, more so than before RT. The pain went away 4 to 5 month after my second round. It just was gone from one day to the other. I still know I have feet and I also know I will never have my "old feet" back, but for now I am doing good. Prof. S also told me to walk barefoot, which I love. I walk barefoot most of the time. My feet don't like shoes. I can not wear shoes with arch support, that would make my feet hurt. It has to be the right pair of shoes for me to walk pain free.


Christl

04/15/2014 10:23
tasoh 
04/15/2014 10:23
tasoh 
Re: Increased Nodule size/ Pain AFTER radiotherapy?

Christl,

Thanks so much for your response! This is so helpful - I searched the forums and couldn't find any mention of this. I'm glad to hear that walking is encouraged. I don't have any pain at all now in my affected foot, so I'm hoping the recovery won't limit me too much assuming Prof S decides to treat it. I've seen in other posts that he also recommends minimalist shoes like the Nike Free - I guess for those times you can't go barefoot. Time for me to make some travel plans!

Kind regards,
Tricia

04/16/2014 00:38
Tamarakruse 
04/16/2014 00:38
Tamarakruse 
Re: Increased Nodule size/ Pain AFTER radiotherapy?

Tricia, I think you've got answers to your questions, but I will add that I was on my feet ALOT during radiation and I don't think it helped. Prof S words were 'no pounding' them then or for awhile after and I think in my thin sole shoes, that feel better, my feet were taking a pounding on hard pavement. I would say the same for running I think. Mine have been worse since, and I was not expecting this.

Tamara

04/16/2014 23:56
tasoh 
04/16/2014 23:56
tasoh 
Re: Increased Nodule size/ Pain AFTER radiotherapy?

Tamara,

Thanks for this information. It does worry me to think about undergoing treatment for an asymptomatic nodule and possibly ending up with pain issues related to the treatment vs. no treatment and possible progression and pain/disability from the disease. I'm sure everyone with this problem has to weigh the options of "watchful waiting" and taking action. Your experience gives me pause, but I am leaning toward going for treatment in August.

I'm sure this is all depends on the individual, but I hope your feet improve soon.

Tricia

04/17/2014 16:20
prezzacc 
04/17/2014 16:20
prezzacc 
Re: Increased Nodule size/ Pain AFTER radiotherapy?

Hi Tamara,

Glad you went for it in the end. When did you travel? We may have been there at the same time! Our stories sound similar i am only back for a couple weeks but my nodules go a little firmer quicker and they relly do feel like they are coming out more (like out of the skin ie bigger!)

Prof S said they may get firmer as they may begin to turn to scar tissue (i think ?) he blinded me with some science a bit so im not sure thats right but he said it seemed normal. I really dont regret at all, i think i may regret the timing , as i mentioned in my first post i have 2/3 weeks of 8hours+ walking holiday coming up soon!!! Maybe i should have gone after that, but i wanted to catch it and thought after 2/3 weeks things may be dying down. My feet are a little inflamed so i just keep them reseted and up when i can. Ive also ordered a spikey massage ball! Although that just looks painful!


Taosh - Being a runner , this must be hard for you. I agree with Christl.... Prof S said "be normal, do what you do" at least in regards to walking etc and said just carry on as you would. So yes he encourages normal walking, but i assume as Tamara mentioned you can still "overdo" it. I think i also did this while walking in Germany as my nodules got sore quick!

We've made our choices now and like someone said, we have done all we can , tried! :)

PS quite right about the choices, such a hard choice!

Thanks

04/17/2014 21:57
Tamarakruse 
04/17/2014 21:57
Tamarakruse 
Re: Increased Nodule size/ Pain AFTER radiotherapy?

I was there over a month ago now. But yes, as I said before, we have to feel good about trying everything we can. The timing for treatment is the most important, and I might have done the pain to myself with all the walking, but today they feel good, so cross your fingers. Are you going back for a second treatment. My plan is first week of July.

Tamara

04/18/2014 08:47
prezzacc 
04/18/2014 08:47
prezzacc 
Re: Increased Nodule size/ Pain AFTER radiotherapy?

Hi Tamara,

Glad they are feeling good. I now have stitches in one foot as i had to have a mole removed. My feet are just beaten up constantly!!! So i cant feel my nodules much as im limping due to the location of mole. Oh dear!

I too will be there in the first week of July!!! Ive booked already...i must warn you though they are closed one day so ive had to now go for 4 days treatment at an increased Gray. I had already booked flights etc so it was too late to change. Also Prof S is off in the second week of July i think he said? For holiday.

Who knows might just see you in the little waiting room!

07/04/2014 15:58
JackT 
07/04/2014 15:58
JackT 
Re: Increased Nodule size/ Pain AFTER radiotherapy?

tasoh:
Hi Tamara,

I am new to this forum, and wonder if you can answer a question for me. I am seriously contemplating a trip to see Prof S within the next few months. I was diagnosed with DD in the left hand 1.5 years ago (progressing slowly), and just discovered a small nodule along the arch of my left foot. Since I'm a runner, this really has got me on track for RT! Did Prof S give you any instructions about limiting your walking or activity after the RT? I wasn't sure in his answer to me about activity after RT whether a person is restricted as a rule because it could make the RT less successful in some way OR whether one is limited depending on the amount of pain or reaction to the treatment which can vary from one person to the next.

I am anxious thinking about having my running curtailed for extended periods of time after treatment, and this will factor into the timing of my trips to Germany. From a practical standpoint related to work and other commitments, I would prefer to wait until August for my first treatment, but I'm not sure if that's too long. Tough decisions! Thanks so much for sharing your experience through this forum.

Tricia

Hi Tricia.
I'm a runner too in a similar scenario - although a bit further developed I think. Have you had RT? How did it go - I am considering it. Has anyone told you to stop running? So far the advice I seem to be getting is whilst I can then I should keep doing it but I do wonder if that is a contributory factor given the trauma it may cause?

Edited 07/04/14 18:59

07/05/2014 20:05
nanshands 
07/05/2014 20:05
nanshands 
Re: Increased Nodule size/ Pain AFTER radiotherapy?

Hi Tricia,

Hey, not to discourage you but if you just have noticed one small nodule in your foot you may likely not be ready for RT as yet. Consider that your trip to Germany may be more of an exam and discussion than treatment. I have been seen twice now for my LD by Prof. S. I have pain, typical symptoms that indicate treatment, and small, multiple, growing fibromas in both of my feet, but still have not received treatment. Learning to live with the pain and discomfort for about a year now. I have always been very active, I continue to keep up with my walking, but it's no picnic!

All to say, going to Germany for evaluation is helpful, gives Prof. S a good baseline, and helps you in understanding the disease better. But you may not be ready for RT. LD is evidently different with the timing for RT than DC, where earlier can be of greater importance.

Best to you,

Nan

07/05/2014 20:25
prezzacc 
07/05/2014 20:25
prezzacc 
Re: Increased Nodule size/ Pain AFTER radiotherapy?

Hiya Nanshands,

Can i ask, why has the Prof said you are not eligble for the Radiotherapy? I went over for a day meeting and straight away was told i was eligible, i know he uses a 6 point scoring system i assume you dont quite meet what he needs to see yet?

Thanks

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